Monthly Archives: February 2013

Another Cancer Day

Last night, as I was putting on Chase’s IV bag, I mentioned his upcoming visit to the hospital and reminded him that he was going to have a “nap with the doctor” – our little phrase for when he’s under general anesthesia, in this case for another spinal tap.  Every time I’ve mentioned a “nap” in the last couple of weeks he’s whimpered and said he’s scared, but last night, as I put on his bag, he was able to articulate more.  As I asked him why he was scared, he told me that it was because the “nap” “hurt his body” and as I questioned what that meant (assuming some soreness from the tap), he clearly and lucidly said “It’s the two men, Mom. They hurt my body when they go like this [mimics pinching his cheeks together and covering his mouth and nose].  They scare me! Please don’t let them do that, okay?

As I heard my child describe a very vivid memory of what is most likely the three breaths of struggling consciousness against an anesthesia team from a previous procedure, my heart and stomach dropped as my ire rose.

How dare they let that happen? How on earth does he remember? Why?

I almost never find myself questioning the cancer as a whole – it is not in my nature to question the large and inevitable things, but these small moments sear into my conscious and unconscious thought and replay ad nauseum.  In those moments, I am angry and even despairing.  My desire to protect my children rages against the reality of not being able to shield them and being powerless to erase his mental image of men holding a mask over his face while nobody was there to save him.

Like a litany in my head, “I hate cancer, I hate cancer, I hate this!”  I want to fight something, someone – to lash out and change what is.

As we sit and pray together, I remind him (as I desperately remind myself) of our verse:  “Be strong and of good courage, for the Lord our God is with you.” (Joshua 1:9)

I know that I need to trust God and that the only way to remove the heaviness of this moment is to run to the Word for comfort, but how I hate the cancer and all that goes with it.  “The law of the Lord is perfect; reviving the soul…” (Psalm 19:7)

In that moment, I hate it with every fiber, but by God’s grace, I will press on to a restful and peaceful soul because this wretched disease is not the end, but the start.

“…for the Lord our God is with you.”

Moment by moment.

[I feel like I’ve written words and verses like this a hundred times, but today I had to write this out for the benefit of my own heart. I needed to write out and be reminded of why I do what I do and for Whom. So if you’ve heard these words and phrases from me before, bear with me today…I needed to hear them in my own head and heart again.]

**Chase can often be given a kind of forgetting drug so that he’s “gone” before he ever physically seperates from us, but on occasion, that drug is deemed unwise (for a variety of reasons). His oncology team is amazing and as soon as I informed them of what he remembered, changes were put in place to ensure he is more comfortable in future. My writing is about my reaction to his experience – not a current issue with Chase’s care.**

Healing In The Tears

The last couple weeks have been such a blessed break in many ways.  Although Chase had chemo, it was so light that he didn’t need a single transfusion!  These more “normal” days with no hospital are full of nothing and everything.  I find myself actively being a wife and mother, nurturer and teacher in a way that I haven’t in months, but I’m also finding myself often in last summer.
I’m so thankful that I was cautioned by another cancer parent or this preoccupation would have taken me completely by surprise.  The first days and months with cancer have been so intense and involve the daily fight to live and breathe on such a level that its only when I stop that I have the luxury to reflect…and feel.  The misleading thing in all of this is that I truly believe that I have felt and thought and processed as we’ve lived each second, but it’s somehow different…even more traumatic at times.  Flashes of memory often tear into my daily moments…

…that summer moment in our front entry way when I first saw Chase’s hand tremble uncontrollably

…the change in the brash ER doctor as he (with tears in his eyes) said “It isn’t good. There’s a very large mass.”

…watching the city street disappear out the door window of the ambulance as we pulled into the bay at the children’s hospital and thinking “I’m on the inside now…never on the outside of this life again”

…Bob calling me from the EEG room: “Chase is seizing almost constantly. They’re moving us to ICU. Somebody is coming to get you.”

…drawing my knees up and wanting to curl into a ball in the tiny, dim conference room as the neurosurgeon ripped our breath away with words like “malignant” and “tumor cells everywhere

…seeing my baby again for the first time after surgery and hurting for him as he -bloodied, swollen and covered in monitors- rose to his knees in the bed and angrily screamed “I want my Mommy! I want my Daddy!” and the doctors and nurses sighed in relief that he could move and speak and know and I swallowed the guilt of not knowing how to touch him and comfort him with bloody stitches covering the head I had kissed every day…

Hours after surgery

Hours after surgery

These and many others are the litany of pictures and sounds and feelings in my brain that I believe will smooth and gentle with years, but know will remain imprinted until I draw my last breath in this broken world.

This is my daily battle: to acknowledge what has been while breathing in whatever normal is now, and still entrusting to God that which is yet to come.

I will never be able to leave these traumas, but I can control how they shape what is ahead…

“I wonder too…if the rent in the canvas of our life backdrop, the losses that puncture our world, our own emptiness, might actually become places to see. To see through to God. That which tears open our souls, those holes that splatter our sight, may actually become the thing, open places to see through the mess of this place to the heart-aching beauty beyond. To Him. To the God whom we endlessly crave.” Anne Voskamp, One Thousand Gifts

Yes.

This.

My hurt memories push at it, but my soul cries for that Grace and Peace that is the only answer in all the broken.  This that I see even in the pain…at times more clearly in the pain.

And so, I move forward…

Moment by moment.

The night before surgery: monitoring the seizures

The night before surgery: monitoring the seizures

Of Blood and Hearts and Snowflakes

In the hours following Chase’s surgery, scans showed that there were some areas of fluid around his brains – pockets, if you will. I regularly flash back to those uncertain hours and the sick, tight feeling in my stomach as we waited and wondered if he would need to go back into surgery.
Those hours resolved in the same day with a second scan that showed no change and it was determined that the fluid could be watched and waited on as Chase moved forward in stable condition.
Chase -as we well know- continues in stable condition, but the January scans (when we received such good news) revealed that these pockets of fluid have changed: now, there is blood in them.
I won’t even begin to write on a technical level about things like “hematoma” that I don’t even completely understand, but I will reiterate this: Chase is stable. If there was an immediate or emergent quality to this issue, we would see marked changes in him.
Chase will, however, be having a repeat scan in a couple of weeks and will be meeting with his neurosurgeon to determine a plan of action. …a plan that I pray will in no way involve booking an operating room.
The wondering and the waiting. The watching anxiously and exchanging worried looks over his head any time he slurs a word or loses his balance. All of it tempts me to despair and curse the cancer…to throw up my hands and scream “This will never be done! This will never be better! There is no end to this awful disease!”
And yet…
In the middle of this past week, we learned that a little girl who shares our hospital lost her battle with cancer. Her name is Anna. She was 11. Somewhere, her family sits forever changed – doubtlessly reliving the awful moments when they were told that the chemo had done irreparable damage and the very hours were numbered.
I grieve for Anna’s family, yet I am truly thankful for her life’s reminder that I still hold a living and breathing child in my arms and that each second of life is a precious gift.
The day Anna died, I stood looking out the window over the bleak landscape and as I stood, snow began to fall. As I watched the flakes in the air, I was reminded that there is a sovereign God who crafted and knows each design of each flake that touches the earth and he knows Anna’s heart and Chase’s brain and all the whys and wherefores that I don’t and may never know or understand.
I want to tie this all together neatly… The blood pockets in a damaged brain, the chemo-ridden heart that stopped a too short life, the snow that fell and the insight with it. I don’t believe there is a neat or tidy way to wrap these hideous and beautiful things, but this …

“Oh, how great are God’s riches and wisdom and knowledge! How impossible it is for us to understand his decisions and his ways! For who can know the Lord’s thoughts? Who knows enough to give him advice? And who has given him so much that he needs to pay it back? For everything comes from him and exists by his power and is intended for his glory. All glory to him forever! Amen.” Romans 11:33-36 (New Living Translation)

Moment by moment.

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